Wednesday, January 12, 2011

I guess I have become a writer. I also know that my story has changed. I am closing this blog and beginning a new one. You can find me at Life After Caregiving. Of course, you may also follow Shiva's blog. She seems to be channeling Dennis at the moment and definitely has her own take on our world.

Monday, January 10, 2011

Dennis woke me up about 12:30 with his gurgling in his throat. I got up and tried to suction it out and he bit down, and ended up nicking off the tip. I tried to reach it, but he bit me and it went further down the throat.

Despite his wishes, I had to call ER to see if they could get it out. There was no way that I could let something as silly as a blue piece of rubber be the death of him.

As we sat in ER, reading over his health care directive with the doctor, I was writing a blog entry in my mind. I was going to make it a light story, and end it with "he is resting well at home."

But that was not to be the case.

I was on the phone all evening with the on-call hospice nurse. We were trying to figure out a way to get him back home once the little blue devil had been removed. We worked together on getting oxygen for him at home by 4:30 AM, then moved it to 8:00 AM when it was apparent we were not going to get home before sunrise.

The ER staff recommended a few things that were not heroic. They were unable to reach the blue devil, but with a camera at the end of a tube they were able to spot it laying on top of his voice cord. Dennis was clenching his jaw. In the very tiny recesses of my mind, I suppose I knew that was his was of saying "No", but it wasn't making much sense to me at that moment. Someone said this is a natural reflex and I said go ahead.

They sedated him because he was still holding his mouth shut at all costs. I opened one of his lids and he was still sparkling, looking at me with love. I asked him if he would cooperate and open his mouth and he squeezed my hand, saying yes. Looking back, I know he was just doing this for me.

Within minutes it had been removed and I cheered, but one nurse said - "not yet." They injected him with something to counter-act the sedative and with the aid of a mask and a hand held pump, they got him breathing again. Not entirely on his own, but he was breathing. The nurse and I rubbed his chest and encouraged him to breath. As we did this he would take deeper breaths on his own.

Then they told me he had pneumonia and would need to stay at the hospital. I said I wanted him treated at home. I was told it would be impossible to transport him at this time, and that he would need to stay for a while. They changed the hand-held pump to a machine to support his breathing. The antibiotics were then started.

Then they tried to suction him out. He spewed out green bile all over the place - both out his nose and mouth. I took this as a good sign; they were clearing his lungs and he would be home for our 8:30 appointment with the hospice pharmacy and visiting nurse.

He was stable, and I asked if I could leave to drive the 2 miles to my house, brush my teeth and feed the cat. "Yes! I am right here watching and he is doing great." I returned 20 minutes later and they were preparing to move him to a room. I followed along.

Dennis has had cases of pneumonia before, and I figured he was going to general population. But we stopped on the ICU floor. He was wheeled into a room, surrounded by nurses and doctors asking questions, changing his breathing mask, trying to suction him again, giving him more drugs......

After I was able to reorient myself, I asked the doctor how long they were going to keep up this drug routine.

Until he can breath on his own.

How long will that be?

I don't know.

Is this worth it, I asked him - will he improve?

Are you asking will he ever leave the hospital?

I suppose that is one way to put it.

I have very little doubt that he will ever leave here.

Then we need to pull off the oxygen, all the other supports and let him go now.

So they did. The nurse pulled him over to one side of the bed, and made room for me. She removed the mask and removed the wires and all the other jazz that was standing in my way of holding him close to me. And I held him. I held him until he took his last breath. I held him for a few more minutes and then left the room to tell the doctor. He was pronounced dead at 8:30 on January 8, 2011.

Thursday, January 6, 2011

What a whirlwind week. Bed in and bed out. Old feeding pump leaving and a new one arriving. Nurse visit, social worker visit, Pastor and another nurse visit. A few new medications, including a patch to dry up the mouth, a dressing called a skeleton band aid for the bedsores and morphine, something Dennis has always dreamed of trying. Two new PCAs interviewing and filling out applications. Calls and emails to inform family and friends of a change in Dennis' care.

Yes, it's been busy, but everyday that something new happens, it's been good. Every person that has come into the condo has been friendly and caring. Each visit has assured us that we have made the right decision to begin hospice care for Dennis.

For the first time in a very long time, I don't feel over-whelmed. For the first time in a long time, Dennis feels free of pain. For the first time in a long, long time, we both have slept through the night.

Wednesday, January 5, 2011

Our new hospice organization already supplied Dennis with a new bed. It is a pressure guard mattress. Since I can't explain it well, I have put the link to the particular mattress that he has right here.

I am not promoting this particular model, but I am promoting the type of bed. Dennis slept like a baby. Until last night, he had only used his medical bed twice. Now I am sure that I won't be able to keep him out of it!

As for me, I slept through the night for the first time in months. There were no wake up calls for repositioning because the bed automatically does this for Dennis.

I know that some of you out there are dealing with positioning issues and bed sores. If you are, I highly recommend that you find a way to get one of these beds into your home.

Tuesday, January 4, 2011

Do you know that feeling, when someone walks in the room, that the decision is really already made? It wasn't quite that easy, or that swift, but it was close.

When I talked with my therapist last week, I mentioned that I had diagnosed Dennis long before his doctors had given his disease a name. Then we were talking about the last hospice we interviewed and the problem with the feeding tube. I didn't want to do the fighting on this one/ I am tired and I knew the right person could find away around the feeding tube dilemma without having to play games.

So I went online again and looked for a new hospice team. I wrote to two agencies and let them know what our needs were. One wrote back saying they could not help and the other told me their mission was to meet the needs of the patient, whatever those needs were.

We met with them today and after ALL of our questions were answered, we signed up. We only met two of the staff today, but by the end of the week we will have met with two more. A new mattress for Dennis' bed that somehow adjusts his position through-out the night so I don't need to get up every two hours, has already been ordered.

I have been called a good advocate for Dennis, but maybe I am just trying to take care of myself. When he sleeps, I sleep. When he is in good care, I am happy.

This may not be the way we wanted life to turn out, but no matter how life rolls out for us, we always manage to find good people to help us along.

Thursday, December 30, 2010

With Jane and Ralph finally here from London, we are ready to celebrate Christmas on New Years Eve. Secretly Dennis and I will also be celebrating our 10th Anniversary. Neither of us believe he will make it to our real anniversary date in May.

Yesterday was a day filled with frustration and anger. Dennis had an appointment for a feeding tube change and I asked Raquel if she would take him by herself. It did not turn out well. They exchanged unkind words and he came home angry and she came back crying. I let her go for the day.

Then Dennis and I joined Jane, Ralph, Hamed and Ashely for lunch at a local Persian/Turkish restaurant and Dennis was still in a mood and I was angry with him for running off Raquel. We made it through lunch, but the drive home was a bit hincky.

A new perspective came to me this morning. I have too many rules that I have put in place to keep Dennis alive longer. He can't have anything with sugar, corn syrup, dairy products, etc - anything that causes phlegm build-up. He can't eat anything after 2 pm, because he just spits it up and makes a mess for me to clean up. He can't eat in the car for the same reason.

All of these rules are in place for his benefit - or are they? I really prefer not having to vacuum out the crap in his throat each night from over indulging on sugary stuff. His doctor did say no more food so he would not choke at night. I hate cleaning the floor every day, every where he has decided to munch on food.

I could give up any kind of food so easily, but Dennis lives for food. Other than me, food is his number one love. Especially anything with sugar. He lives for desert. My sister understands this - she makes sure he always has a pie whenever he comes over.

This morning I understood that I was taking away his life from him. Oh, I was doing everything that I could to lengthen his life, but I wasn't giving him what he really wants - control over his own life.

So after today (so he can eat and talk tomorrow) he can eat and do whatever he wants. If he wants sugar, he can have it. Chips, not a problem. A bag of sugar, a cookie, whatever he wants, whenever he wants it. I will dig the food he cannot swallow out of his mouth. I will pick up the spills and spit from the floor and his chest. And I will not complain.

I did sob and cry and sob some more all day, though. I don't want him to die. But he will, he is dying. And I don't want to fight with him anymore about anything. We just do not have that much time together anymore.